More cash and understanding needed to help ME sufferers
ME or Chronic Fatigue Syndrome is an illness that has been heard of by most people but is poorly understood.
Last week was ME Awareness week and also worldwide events took place under the banner of “Millions Missing”. This title was chosen to emphasize that millions of people are missing from normal life and millions of pounds are missing from what should be a massive research effort to find effective treatment. Also the sufferers if working could be paying millions in tax.
We spent Friday in Birmingham with other groups and then on Saturday were in Shrewsbury also talking to people and providing information.
Many people with ME are housebound, others may get out occasionally by superhuman effort risking relapse into helplessness again. Others can lead part-time active lives but have to be careful. Of those who develop ME about a quarter return, after a significant period of illness, to relatively normal lives.
So three-quarters do not recover which is why the minuscule amount spent on research at present needs to be increased considerably. Stories from people made the two days into an emotional rollercoaster.
What comes over from sufferers and carers is anger and desperation that an illness as serious as ME is not being treated as such by government.
This leads to most sufferers experiencing disbelief that they are so ill, which when expressed by friends or family is devastating but when it is officials deciding your benefits, or a doctor you hope will help you, becomes a matter of survival – but you have no energy to fight.
There is lots of information on the web. If you know someone with ME listen to them and believe what they say – they are not lazy – they want to be up and about but genuinely can’t get out of bed.
This was brought home to me on Saturday by a local man. He had a daughter with ME and he felt she was malingering and should pull herself together.
His wife was supporting her daughter but this had led to a rift and he said divorce was likely. He came to talk to us because someone told him to find out more about his daughter’s illness.
Such stories are heartbreaking but these situations and those arising from official ignorance, could be avoided by everyone making the effort to understand ME well enough so they can support those who have it.
Frank Oldaker, Shrewsbury